Bioethics is the study of moral issues in the
fields of medical treatment and research. Biomedical ethics is not a new
branch. Hippocrates, the Greek physician, is not only the father of modern
medicine, but also of medical ethics. About 24 centuries ago, he said
physicians should not give poisons to patients and should advocate for the
patient's interest. There was no consensus then either. Hippocrates opposed
abortion while Pluto was in favor of it. Today, every new biomedical
development, such as in vitro fertilization, organ or bone marrow transplantation
from a living relative, genetic modifications of all sorts bring about dilemmas
and conflicting opinions. One difference today from Pluto's time is that
economic considerations are taken into account too.

Following the discovery of the cystic fibrosis gene CFTR, a rush by the
public to get genetic testing done was expected but this did not happen. A
survey of 20,000 people showed that people are not interested in knowing their
genetic make-up unless they have a relative with a genetic disease or they are
involved in a pregnancy. It appears that insurance companies and employers are
more interested in such information for obvious reasons. This is where one of
the greatest ethical conflicts of genetic revolution starts. In a recent review
(1999), the following guidelines for genetic testing of CFTR mutations
are drawn up: Genetic testing for CFTR should be offered to adults with
a positive family history of CFTR, to partners of people with CF, to
couples currently planning a pregnancy, and to couples seeking prenatal care.
The panel does not recommend offering CFTR genetic testing to the
general population or newborns. Comprehensive educational programs targeted to
health care professionals and the public should be developed using input from people
living with CF and their families and from people from diverse racial and
ethnic groups. Additionally, genetic counseling services must be accurate and
provide balanced information to afford individuals the opportunity to make
autonomous decisions. Every attempt should be made to protect individual
rights, genetic and medical privacy rights, and to prevent discrimination and
stigmatization. It is essential that the offering of CFTR carrier
testing be phased in over a period to ensure that adequate education and
appropriate genetic testing and counseling services are available to all
persons being tested (NIH Consensus Development Conference Statement: Genetic
Testing for Cystic Fibrosis, Arch Intern Med 1999).

The ongoing Human Genome Project (HGP) has spared 5% of its budget for
investigations into ethical, legal, and social issues of its findings. This
unusual but well justified event in the history of science shows how great the
implications of the forthcoming findings will be. The aim is to benefit from
the findings of HGP rather than causing social disruption. Today, there are
about 2,000 professional medical ethicists in the USA, coming from academic
disciplines as law, medicine, philosophy, political science and theology.

Perhaps the most popularized ethical question in genetics is eugenics. In the
past, numerous discussions have taken place for marriage laws, sterilization
and immigration regulations in view of the principles of eugenics. The new
genetic technology is likely to initiate similar discussions. In this respect,
cloning and germ cell therapy are the most likely candidates to ignite the
hottest debates. These two techniques are currently not allowed to be used in
humans.

Currently, in some countries and in some states of the USA, legislation exists
to regulate genetic testing, genetic screening, counseling, and discrimination
in employment and insurance matters against individuals with genetic disorders.
The California Hereditary Disorders Act of 1990 is an example. It regulates
access to genetic services, confidentiality of genetic information,
discrimination against affected individuals and carriers, the voluntary nature of
screening programs, the reproductive rights of those at risk of passing a
genetic disorder to their offspring, and professional and public education
programs about genetics. This law establishes the basic elements of genetic
testing: autonomy, confidentiality, privacy and equity. Ideally, all screening
(including newborns) should be voluntary (informed choice), and should be done
only after informed consent (very similar to the Nuremberg Code). The person
should be able to choose not to proceed any more at any stage of the
procedures. The results should remain confidential and anonymous, therefore
should not be used to discriminate anybody on any grounds. Potential areas of
conflict in clinical genetics include genetic testing in children, the
distinction between research and service, and the rights of the individual
versus the rights of the extended family, the doctor and the society. Think
about the implications for the members of the family when somebody is
discovered to have the Huntington's disease gene, or storing DNA samples from
convicted criminals, volunteer blood donors, and all newborns!

In principle, there is no serious objection to somatic cell gene therapy as
this is no different from the medical treatment of an individual either by medicine,
surgery or transplantation. The potential problem is its use for 'enhancement',
in other words, for cosmetic purposes. The opponents of this objection could
easily ask about the proportion of cosmetic surgery performed in plastic
surgery departments or the ratio of these to life-saving plastic surgical
operations. When it comes to germ cell gene therapy, the potential use of it
for eugenics creates a problem. This is because, any change in the germ cell
will be passed on to the following generations forever. When it is used for
medical purposes, i.e., to eliminate a disease gene and to replace it with the
correct version, this is in principle acceptable but isn't this (negative)
eugenics? However harsh it sounds, isn't it the diseases that have played major
roles in the evolution of species? Human germ cell therapy is currently banned
because of the fears of positive eugenics.

Patenting life forms and newly found genes is another hot topic brought about
by the HGP. In a landmark 1980 ruling, the US Supreme Court decided that Dr
Chakrabarty (see Gene
Therapy) could patent a bacterium that digests crude oil. The Court
said that the intent of Congress in establishing patent law was that patents
should cover anything made by human hand. Since then, hundreds of patents have
been issued for genetically engineered organisms, mainly bacteria. In 1986, the
US Department of Agriculture approved the sale of the first living genetically
altered organism--a virus, used as a pseudorabies vaccine, from which a single
gene had been removed. Since then several hundred patents have been awarded for
genetically altered bacteria and plants. In 1987, the Patent Office ruled to
issue patents for non-human, multicellular organisms including animals produced
by genetic engineering (not by natural breeding!). The examples include
genetically engineered pigs by germ cell gene therapy to have human growth
hormone gene to grow up faster, a goat and sheep chimera called geep, and many
transgenic mice. Humans modified genetically cannot be patented but the
techniques can be. By extension, the Patent Office also issues patents for
genes. Among the patent holders, an interesting one is the NIH itself. One day,
it may be possible that large biotechnology companies may hold the patents for
all livestock genomes.

Like all great moral issues, there will never be a permanent consensus in bioethics.
Each society will reach a temporary solution that seems to make sense in their
times. One should remember that in 1974, recombinant technology was banned in
the USA. When five years had elapsed, it was thought to be an appropriate
technique to use. Today its use for good causes is enormously popular and
economically rewarding.

Ethics of
Cloning

In vitro fertilization (including those using
a donated oocyte), insemination with donor sperm, intracytoplasmic sperm
injection (ICSI) are the recent techniques which enable individuals who would
otherwise could not have a child to have one. These means of having a child
have been widely accepted without any major ethical concern despite that a man
with abnormal sperm and a homosexual woman can now reproduce just like anybody
else. As a potential use of cloning, what if a lesbian couple wants to have a
baby using one's oocyte and a nucleus from the other? Cloning creates a clone
of one parent (the source of the nucleus), but not a shared descendant of both the
father and mother (except the contribution of the mitochondrial genome by the
female). It can be predicted that in some cases public opinion for cloning may
be favorable. For example, if the male partner is sterile, it may be acceptable
for this couple to have a baby through cloning. The mother would still
contribute with her mitochondrial genome, intrauterine influences and
subsequent nurture. From now on, the technical barrier has been overcome and it
is the moral barrier that tops the agenda in cloning research. Would cloning be
used to create second-class citizens or would it revive slavery? If so, should
it still be banned considering the fact that these have been achieved without
using high technology anyway? There are also objections to human cloning in
terms of the social prejudice such children will have to face. But, is it going
to be any different from what already happens to children of mixed-race
couples? For therapeutic abortion, on the other hand, there are worries that an
embryo is being 'killed' to treat somebody. Is it really a case that an
unimplanted conceptus (that can only be called a pre-embryo) can be seen as a
living subject? There is a philosophical point of view that creating human life
for the sole purpose of preparing therapeutic material would not conform to the
dignity of life principle. In the UK, currently, the use of human eggs is
illegal if the intent is to create an embryo even only for cell replacement
(therapeutic cloning). In most countries, including USA, legislation does not
exist to stop therapeutic cloning. It is then simply a matter of professional
ethics. Cloning allows a woman with a mitochondrial DNA-linked disease to have
a healthy baby that would be impossible otherwise. What would be the public's
reaction to such an attempt? It is clear that there will be medically justified
uses of cloning in humans, what is not clear is that if any license is issued
for any application of cloning, who is going to draw the line for further
applications? Cloning is such a technique that shortcuts the safeguards imposed
by sexual reproduction. Even a sterile person can now have a child. Patients
with cancer are routinely offered storage of their gametes before they are
treated by chemotherapy or radiotherapy after which they would usually become
sterile. With cloning, they can have a child anytime. Since cancer has a
genetic component, are we not going to keep these genes in the population at
higher than ever frequencies by doing so? If eugenics is wrong, is this, the
opposite of eugenics, right?

Eugenics

The success of artificial breeders in
improving the inherited characters of domesticated animals, cultivated plants
even microorganisms raised the issue whether the course of the human evolution
can also be changed. Eugenics is the false science of improving the quality of
the human species through selective breeding. The word eugenics comes from the
Greek for good genes. Any policy that is thought by advocates to stimulate the
prevalence of 'good genes' is considered eugenic in its effect. Its origin goes
back to earlier times. Plato's Republic describes a society in which there is a
continuous selection to improve humans through selective breeding. In modern
times, the establishment of social Darwinism paved the way for eugenic
movements. Modern eugenics relies on the idea that careful planning through
selective breeding is the key to improve society. Eugenics supplies a
biological or genetic interpretation to its means and aims. If it is a
particular race that is to be targeted, the eugenicist will first offer a
so-called scientific basis for such a plan. This usually consists of
statistical 'evidence' that the race in question is less capable of
achievement, more prone to anti-social behavior, or responsible for a prevalent
social problem. Most importantly and most of the time wrongly, the eugenicist
will insist that this 'inferiority' has genetic basis. In 1900, with the birth
of modern genetics together with the belief that humans are the superior
species, the interest in improving the human race led to the eugenics movement.
There are two basic types of eugenic action:

1. Negative eugenics emphasizes the restriction on reproduction of unfit types.
The idea is to improve the human species by identifying individuals and couples
at risk of maintaining and spreading inferior genes and to prevent such persons
from reproducing.

2. Positive eugenics encourages the reproduction of 'high quality' individuals.
Very often, however, the identification of 'good' hereditary human traits is a
subjective and even political matter.

Many organizations devoted to eugenic
purposes arose around the world, but the movement was especially strong in
England, the United States, and Germany between 1910 and 1940. From the
beginning, the movement was closely associated with a sense of white
Anglo-Saxon superiority. Sir Francis Galton (a cousin of Charles Darwin) is the
founder of the English eugenics movement. He coined the term eugenics in
'Inquiries into Human Faculty' in 1883 and continued to advocate his ideas
until his death in 1911. He had been drawn to the study of human heredity and
eugenics by his curiosity by the hereditary genius in his own family. Galton,
who was primarily a statistician, founded a eugenics laboratory and established
a research scholarship of eugenics at University College, London in 1904. In
his will, he provided funds for a chair of eugenics at University College,
London University. The fellowship and later the chair at University College
were both occupied by Karl Pearson, a brilliant mathematician who helped to
create the science of biometry (the statistical aspects of biology). In his
book, Hereditary Genius (1869), Galton proposed that a system of arranged
marriages between selected men and women would produce a gifted race. In
another book, Natural Inheritance (1889), Galton developed statistical methods
to the study of man. He was the first to recognize the value of the study of
twins for research in heredity. Interestingly, Galton's eugenics movement did
not gain wide acceptance, because of the lack of scientific and technical
foundation. Moving on the same path after Galton,
Pearson felt that the high birth rate of the poor was a threat to civilization.
Pearson became the Galton Professor of eugenics at University College in 1911.
He shares the blame for the discredit later brought on eugenics in the United
States and for making possible the dreadful misuse of the word eugenics
in Adolf Hitler's propaganda. The English Eugenics Society, founded by Galton
in 1907 as the Eugenics Education Society, opposed Pearson's views but was
unable to stop the growing racial discrimination of that time. The Eugenics
Society (England) is now known as the Galton Institute.

In the United States, eugenics exerted considerable influence on popular
opinion and was reflected in some state and federal legislation. The American
Eugenics Society was founded in 1926 by men who believed that the white race
was superior to other races. They even thought that the 'Nordic' white was
superior to other whites. They thought of races as discrete groups. They did
not know that all races are mixtures of many types, the distribution of genes
among the races varying in proportions rather than in kind. The American
Eugenics Society promoted the idea that the upper classes had superior
hereditary qualities that justified their being the ruling class. The result of
these activities was the passage of the Immigration Act of 1924 (the Johnson
Act), which limited quota immigrants to about 150,000 annually. It was a
coalition of eugenicists and some big-business interests who pushed through the
Johnson Act which limited immigration into the United States from eastern
European and Mediterranean countries. Later, it became clear that the material
the eugenists had presented to congressional hearings had little scientific
foundation.

Another consequence was the sterilization laws. Between 1907 and 1943, 30
states in the USA passed sterilization laws. By 1935, sterilization laws had
also been passed in Denmark, Switzerland, Germany, Norway, and Sweden. Most of
these laws provided for the voluntary or compulsory sterilization of insane,
mentally retarded, epileptic, criminal and sexually deviant people. In
California, sterilizations averaged more than 350 cases per year, with a total
of 9,931 by 1935. Laws were also passed restricting marriages between members
of various racial groups. The American Society survives and flourishes to the
present day, although, since a name change in 1973, it has been known as the
Society for the Study of Social Biology. The new name is not believed to
reflect an alteration in its goals. Unquestionably the greatest abuse of the
concept of eugenics took place in Hitler's Germany, when as a rationale for
producing a 'master race', the Nazis murdered millions of people considered to
have inferior genes. Eugenicists were embarrassed by Hitler. After the war,
they instituted various strategies to cover up the collaboration that had
existed between German, American, and English eugenicists. For example, they
adopted a policy of 'crypto-eugenics' and founded cover organizations like the
Population Council and the International Planned Parenthood Federation to carry
out their aims.

After the German Nazis used eugenics against Jews, Gypsies, the insane, and
homosexuals, the assumptions of eugenists came under sharp criticism which led
to the discreditation of eugenics. Recent developments in the diagnosis and
treatment of genetic defects have stirred up a eugenics debate within the wider
context of medical ethics.Since the 1950s there has been a renewed interest in eugenics.
Because certain diseases are now known to be genetically transmitted, many
couples choose to undergo genetic screening, in which they learn the chances
that their offspring might be affected. The practice of modern genetic
counseling is in a way a eugenic activity, in that it attempts to prevent the
conception or birth of individuals with most serious forms of maldevelopment
who would be burdens to themselves and to their families. This form of negative
eugenics identifies individuals and couples at risk of perpetuating genes that
lead to heritable diseases and disorders. It is, however, important that
information on these risks is given to couples so that they can make informed
and personal decisions about reproduction without societal pressure.

Counterbalancing this trend, however, has been medical progress that enables
victims of many genetic diseases to live fairly normal lives and even to
reproduce. Genetic surgery, in which harmful genes are altered by direct
manipulation, is also being studied. It could obviate eugenic arguments for
restricting reproduction among those who carry harmful genes. Such conflicting
innovations have complicated the controversy surrounding eugenics. Furthermore,
the concept of eugenics tends to ignore the sizable role that environment plays
in the establishment of human characteristics. Suggestions for expanding
eugenics programs, which range from the creation of sperm banks for the
genetically superior to the potential cloning of human beings, have met with
vigorous resistance from the public, which often views such programs as
unwarranted interference with nature or as opportunities for abuse by
authoritarian regimes. Thus, the use of eugenics as happens in modern genetics
today is generally acceptable but the potential for the use of the same
principle for racist purposes still disconcerts many societies. From this point
of view, the situation is similar to the ethical approaches to cloning. Its
potential contributions to human health are unquestionable but the possibility
exists that once the method is perfected, it can fall into wrong hands.